Parent
Advocates : Born in the NICU

The
quality and frequency of a parent’s participation in their child’s care
in the NICU can play a significant role in their effectiveness after discharge
when they become the parent advocate of a special needs child.

Parent Advocates : Born in the NICU

The quality and frequency of a parent’s participation in their child’s
care in the NICU can play a significant role in their effectiveness after
discharge when they become the parent advocate of a special needs child.
Some NICU experiences mold parents interactions with professionals for
many years to come. Eight important characteristics significantly influence
a parent’s future role as advocate.

1. The NICU environment is stressful.

The NICU experience is intensely emotional and stressful. Often an immediate
response is required to new or inadequate information. Issues such as
life and death crises, quality of life, and very dramatic episodes are
interwoven with periods of mundane monitoring and exhaustion.

2. The NICU environment is child centered.

In the NICU, decisions are generally made with the welfare of the child
foremost. The parents are lower on the list of priorities, after numerous
professional and operational considerations. Most parents are content
with the placement of their child at the center of focus, and in fact,
come to expect it.

3. The NICU environment is professional.

Parents and babies are immersed in high technology and interact daily
with specialists, doctors, nurses, and other medical professionals. The
NICU has its own jargon, rules and routine ways of operating determined
by the profession, which parents adapt to and perhaps even finds comforting
over time.

4. The NICU environment is well documented.

Parents come to expect and rely upon a high level of documentation and
transfer of detail from one member of the staff to another. How much they
are encouraged to share in the availability of documentation may vary
from place to place. The more access parents have to information, the
more involved they may feel and the better prepared they may be for their
future role in child care. However, in all cases parents end up expecting
and relying upon detailed documentation.

5. The NICU environment is constantly changing.

Parents and babies cope with an ever changing group of professionals.
Continuity is generally encouraged, but constant change is a fact of life.
Increased parental involvement can provide greater continuity of care
for the infant. Providing parents with a focal person can provide greater
continuity for the parent in transfer of information and encouragement.

6. In the NICU, parents are part of a team.

The NICU team is coordinated by a leader or leaders other than the parent.
Ideally the parent is part of the team. The more parents feel included
in the decisions for their child and the more knowledgeable they become
during this period, the better they will be able to make informed decisions
and transfer knowledge in the future.

7. In the NICU, parents interact with experts
on the care of their child.

The professionals in the NICU almost always know more than the parents
- both in terms of theoretical and experiential knowledge. Although the
information can be overwhelming, the more parents understand the events,
procedures and potential consequences, the better informed they will be
to make decisions in the future. Parents will live with the consequences
of some decisions for the rest of their child’s life.

8. In the NICU, parents learn to parent in an
unique environment.

In the NICU, parents exist on the "turf" of the professionals.
They desperately need and value the NICU setting and the people caring
for their child. However, they are not in charge or at home--an unfamiliar
and unnatural environment for parenting.

While unintentional, parents receive a subliminal message in the NICU
that they cannot provide adequate care for their fragile children. Presumably,
as parents become involved and informed during their time in the NICU,
they will feel more confident and be better prepared to care and advocate
for their child down the road. There are a variety of ways this may be
encouraged. NICU parents may be invited to take over much or part of the
routine care (e.g., feeding, holding, changing, bathing) of their children
when medically feasible. NICU personnel can make a special effort to ensure
that parents are involved in the accomplishment of major milestones (e.g.,
first bottle, first clothes, first time out of isolette, first bath).
Overall, it is likely that both parent and child will benefit when parents
undertake more "normal" parental interactions (e.g., holding,
rocking, swaddling, kangaroo care) over the course of a stay in the NICU.
This ‘on-the-job training’ allows parents to become more invested, affirmed
and comfortable with parenting early on. As an added benefit, the baby
experiences more continuity of care.

After the NICU : Finding Yourself In Charge

The same factors that are important in the NICU continue to play an important
role in the lives of parents and children after discharge. However, the
relative responsibilities of parents and professionals have changed. If
parents have a child with special needs, they become a "special needs
family" with issues and needs beyond "normal" parenting.
The responsibility for identifying and addressing these issues and needs
now rests with the parent.

Parents often emerge from the stressful environment of the NICU with an
intensity of focus and concern for their children more immediate than
many other families. Parents are used to having their children’s issues
be of primary importance. They may be dismayed to find that this singular
focus on their child is not shared by the professionals they encounter
later. For example, preschools and schools are still child-oriented but
are less responsive to the individual, immediate needs of each child than
is the NICU.

Life will still feel like a whirlwind, but likely without some of the
immediate support the parents came to rely upon during their time in the
NICU. Additionally, parents will continue to cope with change, such as
frequent turnover in school personal and therapists and other transitions
each year and throughout the year. Children’s needs will also change over
time and new issues may emerge or resolve.

After the NICU, the new responsibility of parents means they will encounter
a whole new group of professionals and an entirely new set of jargon.
Now however, they must learn from the experts themselves and then transfer
and implement the information. At times parents will find themselves to
be more educated on issues than the professionals they encounter - a discouraging
event for any parent but particularly those used to the exceptional standards
of the NICU.

Overall, parents discover that they are ultimately responsible for the
welfare of their child. They come to understand that parenting alone is
not enough. They must assume a new set of roles to ensure that the necessary
coordination, documentation, communication and implementation occurs to
support their child’s growth and development.

Conclusion

Parents do not necessarily come to advocacy for their special children
by nature. They come to advocacy having survived the NICU--perhaps the
most emotional and stressful time of their lives. It is important that
parents of children of special needs understand the breadth and depth
of the roles they must play in their child’s life. It is a difficult and
sometimes overwhelming responsibility, but the benefits for parent and
child are ultimately rewarding.

Copyright Allison Martin 1999, 2001

Part 1 of "After the NICU : The Birth of Effective Parent Advocates"
was presented at the International Conference on Prematurity, "Directions
for the 21st Century, Bridging the Gap Between Parents and Professionals."
July, 1999.

Allison Martin, MPA, is the manager
of the Comeunity and Premature Child websites. She has been involved in
support for preemie parents since the birth of her son in 1988. Allison
Martin is the listowner of Preemie Child, a support email list for parents
of older children born premature, where the discussion in this article took
place.